Saturday, February 27, 2010

Hope Against Hope: I Believe

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.  Helen Keller

"The thrill of victory, the agony of defeat" is a phrase once used by a particular television network for Olympic competition. Of course, there is much more potential for losing a competition in the Olympics, than there is for winning. So, is it the potential "thrill" that enables athletes to endure the likely "agony". I think not. Anyone who has experienced the "thrill" knows that it is neither cheap nor shallow. And cling to it as you might, it inevitably will be fleeting. Alternatively, the "thrill" could represent the apex of personal experience, never to be repeated, and defining the life that follows, for better or for worse. There is a current phrase, chosen by the Canadian Olympic promotional pundits, that seems to say it all: "I Believe". That two-word phrase encapsulates both the aspirations and commitment of competitors seeking that thrilling victory on the world stage. But perhaps more importantly, it is the mantra of those spirited Parkinson's warriors confronting the agony of the constant battle with an enemy that seeks to defeat them at every level. We must believe! It is at the core of every worthwhile human endeavor. It is the essence of the human spirit. We must have hope!

Of course there is controversy. Some, including Margo MacDonald, the Scottish parliamentarian, also a person with Parkinson's, is sponsoring an “End of Life Care Bill” to facilitate assisted suicide when hopelessness takes over. Given the horror of PD, and other more devastating afflictions, I am surprised that there is not more suicide in the world. But there is an explanation for the uneasy response to hopelessness.

Despite views to the contrary, I believe there is something irrepressible that lives deep within us, something that sees the distant light in even the darkest night. It seems to me that Alexander Pope was right when he wrote in “An Essay on Man”, "Hope springs eternal in the human breast". Hope, it seems to me, falls outside the simplistic rubric and theory of cosmic chemical evolution. Is it possible to live without hope? Surely Dante was right when he labeled hell as a hopeless existence, and conversely, hopelessness is a kind of hell. But who has no hope? As Ecclesiastes 9:4 states, "anyone who is among the living has hope".

So, on what are you pinning your hopes? Why can you say" I believe"?

For most of us facing a frightening future of physical, and possibly mental, decline due to disease, the answer to that question may be in breakthroughs in medical science, increasingly effective medication, or even perfected means of surgical intervention. In the world of Parkinson's, one current great hope is deep brain stimulation (DBS). DBS involves clamping your head in a stainless steel box-frame so that it cannot move for 6 hours or more while a neurosurgeon drills a hole or two in your head, through which an electronic battery-powered probe is semi-permanently placed to touch the near center of your brain. Once installed this brain-based pacemaker is connected by a wire running like a vein from the electrode beneath your scalp, under the skin of your neck, to the battery pack implanted just underneath the surface in your upper chest. There it looks like a deck of cards that was left by some careless workers on the assembly line that put you together. And by some twist of scientific genius, for DBS to be effective it is necessary for you to be awake during the entire hole-drilling, probe-placing procedure. Despite this being high-risk brain surgery, it is a reasonably good bet that a person sliding down the slippery slope of PD will regain at least a few years of increased functionality from this device buried in the cranium before it needs to be replaced or removed.

But for some the options are few. Apart from an immediate risk-free cure, what is the best we can hope for? What is hope; real, daily, sustainable, no matter what happens hope? What is the source of human hope? One need not necessarily be religious to conclude, as Victor Hugo said, "Hope is the word which God has written on the brow of every man". It is part of who we are.

For me, PD is like experiencing the aging process in fast-forward. Despite doing my utmost to cling to the physical and mental vitality I once knew, my 57-year-old body and mind mourn the ever-increasing loss of youthful vigour and resilience. Life is degenerative. But even so, I can choose where to place my hope. Despite the odds, I can choose to believe. I understand that, for some, Parkinson's disease can quite easily lead to a predictable march into hopelessness. But even if my hope becomes shriveled and parched from time to time, I know that it will never disappear. It is like a seed that even if it lies dormant for a season, it will endure. It will prevail. There is your principal hope in the Helen Keller quote stated above. For I believe that life itself is worth living, if not for oneself, then for others.

Whether a cure for PD comes along or not, this conclusion comforts me daily: It is what you hope in that determines the path of your life. We all get to choose. Will it be the "thrill of victory" or the "agony of defeat"?

1 comment:

  1. I bet Steven Hawking never saw his neuro disease as the agony of defeat. He has shown the world how to rise about physical disabilities to make a difference in the world. And of course, Helen Keller is the best example of a life others thought was useless and she rose to be a powerful woman of influence due to one woman's belief in her.
    You, my blogging friend, have a world of readers who think you are making a difference whether your hands shake, your shoulders become immobile, or even when you can't walk. You are touching lives daily throughout the world, impacting those with and without PD. Continue shining as a star in the PD realm so we ordinary readers who don't have any physical deteriment can see how we should handle any obstacles thrown in our less than perfect paths.